‘Dispatch from D.C.’ PV man taking part in national effort to lobby on behalf of disabled

Prairie Village resident Finn Bullers, who has muscular dystrophy and type-1 diabetes, is taking part in the United Spinal Association’s “Roll on Capitol Hill” — a national effort to lobby Congress for laws to improve the lives of the disabled. Bullers, who you may recall had to endure a lapse in skilled-nursing care during the transition to KanCare earlier this year, will be sending in updates from D.C.

By Finn Bullers

WASHINGTON, D.C. -— In the skies at 22,000 feet, I’m drawn to think big-picture thoughts of mortality, chance, consequence, accessibility, humanity — and whether Delta Airlines will re-route my lost luggage and Super Shuttle will pay us for the 4-hour and 45-minute delay.

Finn Bullers (left) and Overland Park-based ResCare nurse Karen Iverson arrived in Washington, D.C., Sunday.
Already, it as been a long, strange trip. And it’s only Day 1. The irony of inaccessible wheelchair access smacks us in the head.

As you read, scores of people with disabilities from across the national are gathering for the United Spinal Association’s “Roll On Capitol Hill,” an annual, all-out lobby effort to push an agenda of inclusion, freedom and independence. Through Wednesday, legions of people with disabilities will fan out across Capitol Hill to meet with powerbrokers and drive home a simple, yet powerful message: Pass legislation allowing better access to complex rehab technology.

In 2008, Congress said this was a priority. Nothing happened. Five years later, a new generation of consumer advocates are still facing the same issues — and are here to fight back with H.R. 942 and S. 948.

Ask yourself, does it make sense that insurance companies pay tens of thousands of dollars to save a life with life-flight, emergency room procedures, surgeries, intensive care stays, rehab stays, home health services, medications, etc. and then do not provide necessary medical equipment that facilitates healthy functional independent living?

Insurance companies will pay tens of thousands of dollars to fix a pressure wound, but deny a wheelchair that will last at least five years and will cost $1,000-$5,000 a year. Complex wheelchairs, experts say, are not as expensive as other medical devices, procedures and medications that keep us healthy.

Donna Adell of Ottawa, Kan., is confused by all this. The power wheelchair her husband Charles uses was supposed to make his life easier after a hip- replacement surgery five years ago cut him off from an active life. Medicare paid for the chair, Donna Adell said.

But then Medicare refused to service the chair and provide replacement batteries because officials said the chair was to be used only inside the home.

“The whole purpose for the power chair was to help (Charles) become more independent — to get outside, to visit friends and neighbors, and to go up to our mailbox,” Donna Adell said.

In mid-May, Sen. Chuck Schumer, a New York Democrat, and Sen. Thad Cochran, a Mississippi Republican, joined forces in a bipartisan effort to improve the life of Charles Adell and tens of thousands of people with disabilities across the country. There are 380,000 Kansans with disabilities, 10 percent of whom use wheelchairs.The introduction of Senate Bill S. 948 — “Ensuring Access To Quality Complex Rehabilitation Technology Act of 2013” — is designed to create a separate benefit category paid through Medicare for items like power wheelchairs and specialized seating.

The bill eliminates Medicare’s “in-the-home” restriction for complex rehab equipment covered by Medicare, Medicaid or private insurance. This bill is the Senate companion to House Bill H.R. 942, introduced in March. The legislation is designed to give people like Charles and me better access to technology that holds the power to transform dark days of exclusion into the white light of inclusion. For years, lawmakers have pushed to get people with disabilities into volunteer jobs in our schools, part- time jobs and even full-time employment that keeps tax revenue swelling public coffers.

At the same time, Medicare says a person in a complex wheelchair can’t roll out the door to go to work. Or to attend a child’s soccer game. Or to volunteer to help with third-grade “Rocket Math” at school. Does that make any sense?

Some 39 representatives already have signed on as co-sponsors, increasing chances the bill will become law. Now is the time for all Kansas and Missouri legislators to sign-on. This is not a partisan effort, it’s a people effort.

In my case, better access to a complex power wheelchair gave me a chance to save my right leg. Muscular dystrophy, pressure sores and fluid buildup caused a small wound to grow significantly, become infected and gangrenous and threatened to expose bone. Doctors wanted to amputate my leg. Instead, a power wheelchair let me elevate the leg by pushing a joystick. The swelling decreased and over many months, the gaping wound healed.

Access to complex rehab technology, saved thousands of taxpayer dollars — and my leg. Unfortunately, thousands of Americans like Charles Adell are not so fortunate. We can do better. It is estimated that one in five Americans is living with a disability. Most Americans will experience a disability at some point during their lives, either personally or within their families.

And as advances in public health, medical treatment, and technology enable people to live longer lives and survive once-fatal diseases, the likelihood of their developing a disability increases.

It is crucial that we continue our work to create a more accessible and inclusive society.